seeing a specialist

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

seeing a specialist

Postby corynsmommie » Wed Aug 22, 2007 9:46 am

I took my daughter to her pediatrician on saturday and I told him what the neurologist had said (that she needs to have a new MRI and see the ns) He also highly recommended that we seek out the help of a specialist. He gave me a copy of her last MRI and it said that she has "fluid present in the spine from T9 to the Conus" I dont even know where to conus is. He changed her upcoming MRI from lower spine to whole brain and spine and said I would recieve a copy of it to take to a specialist.

I have researched Dr. Orr in colorado and the Chairi institute in NY. These are the two specialist I would like to take her too. I have two children and we dont have any money to spare so I have have started doing reasearch on medical grants in Missouri so we can take her to a specialist. I am having a very hard time finding anything of this nature but I do know that there out there. If anyone has any idea how to go about applying for these grants or know who to contact I would greatly appreciate the advice.


Postby razzle51 » Wed Aug 22, 2007 9:52 am

another good Dr. is Dr. Frim in Chicago . He is closer to you.

google his name and there will be greats sites about him .

try this link for finicial asst. or ask them who you should call ... tion=Links
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

User avatar
Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

Postby 07192007 » Wed Aug 22, 2007 10:28 am

I see you are from Missouri...have you looked into St. Louis Children's Hospital? They have a great Pediatric Neurosurgery program there.

Postby PandR'sMom » Wed Aug 22, 2007 10:51 am


I'm going to second the suggestion to look into Dr. Frim at the University of Chicago. He is a great doctor and all-around nice guy. We're lucky enough to live in the Chicago burbs, but I'd travel around the world to take either of my children to him. If you decide to go with him, there is a Ronald McDonald House for you to stay at while in town.

Kim ~ mom to Patrick (12.5yo) and Rebecca (10yo, Scoliosis/CM/SM, decompressed by Dr. Frim Oct 2006)
Posts: 14
Joined: Sun Jul 22, 2007 8:53 pm


Postby bbuerk » Mon Aug 27, 2007 4:51 pm

Another pediatric NS not too far is Kerry Crone at Cincinnati Children's. He recently published a large series on his experience w/CM-I using intraoperative ultrasound that was VERY impressive.

Postby drummergrl » Fri Aug 31, 2007 10:49 pm

I can vouch for Dr. Crone, too. He did my decompression surgery and he's amazing. He's also a really nice guy and completely calmed my parents down.
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

Postby MatthewsMom » Mon Sep 03, 2007 12:09 pm

Another NS at Cincinnati Children's Hospital is Dr. F. Mangano. He is the one that done my son's decompression surgery. He is a wonderful man. He is always in constant email contact with us.
Posts: 12
Joined: Tue Jun 19, 2007 1:10 am

Postby willsmom » Fri Sep 14, 2007 8:25 pm

If money is an issue for you and you need to travel, there is an organization called Angel Flight that arranges transportation for you and your child. They are all volunteer pilots who fly smaller planes (not commerical). My husband is a pilot for them here in Dallas. If you want more info about them, post and I will send you the info.
Posts: 119
Joined: Fri Sep 14, 2007 8:03 pm
Location: Dallas, Texas

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 4 guests